A valiant fight against a genetic disorder

Feb 25, 2018 News

By Sharmain Grainger

Henry Brandon fought and won against polycystic kidney syndrome

Many of us are familiar with the term kidney failure or chronic kidney disease, but not so many of us might be aware of polycystic kidney disease, also known as polycystic kidney syndrome. Well, like the condition we may recognise as kidney failure, polycystic kidney syndrome is also a condition that medical practitioners have been dealing with right here in Guyana.
While most chronic diseases could be combated by lifestyle changes, the polycystic kidney condition is one that is linked to an individual’s genetics, meaning that it is something passed down from one generation to another.
Moreover, the polycystic kidney condition is a genetic disorder in which the renal tubules [essential structures in the kidneys] become structurally abnormal, resulting in the development and growth of multiple cysts within the kidney. This might sound like a relatively new public health phenomenon, but based on reports, medical personnel were battling this condition from as far back as the early 1900s.
It has, however, been proven that the condition may not be passed down to consecutive generations. Such is the case of Henry Brandon of Golden Grove, East Coast Demerara. There are records to suggest that older members of his family had the disease that started to manifest in Brandon towards the end of his teenage years. It all started with an abdominal pain that was felt in his sides. The pain was so severe at times that he simply couldn’t just let it pass.
Brandon decided to visit the health centre in his community and the doctor there, upon examining him, detected that there was some sort of abnormal lump in his abdominal area.
Not able to give a precise diagnosis, the doctor referred Brandon to the Georgetown Public Hospital Corporation [GPHC] to have an ultrasound done. This was back in 2010.
Brandon was barely 21 years old and confronted with a health condition that he couldn’t really comprehend. At the GPHC, he learnt that he would be placed on a list to have an ultrasound done in a matter of months. But Brandon’s family was not prepared to wait that long to know what was happening within his abdominal walls.
An ultrasound done at a private hospital in April 2010 revealed that the lump felt by the doctor was in fact as a consequence of his polycystic kidneys. However, even at that point, doctors were not able to determine whether he was suffering from chronic or acute polycystic kidneys. In the case of the chronic condition, the symptoms get progressively worse, while in the acute case, symptoms happen suddenly. Over time, it was ascertained that Brandon’s condition was a typical chronic case.
It was after his diagnosis that Brandon got an eerie appreciation for the seriousness of the disease that had invaded his young anatomy. “This thing was genetic, and it was irreversible I also learnt,” Brandon said of his condition.
His condition progressed with him passing blood in his urine, and on several occasions he was hospitalised for as many as five days at a time. If his memory serves him right, he was hospitalised, at some point, every two years from 2010 to 2014.
But he had the backing of his parents and his siblings, and loads of prayers, to help him get through each day, especially those days when his symptoms got unbearable.
“Because I was passing blood through my urine, I was literally losing blood from my body, and so my blood count started dropping. There were days it went from not being normal to dire consequences…I could just be standing somewhere and blackout and things like that; there were times I even started to see only in black and white,” Brandon shared recently.
But even through his symptoms, Brandon was determined to press on. He started attending the GPHC’s Kidney Failure Clinic.
And not only did he continue to be a diligent teacher focused on educating his charges, but he also met and married his wife, Shanta, who also helped to strengthen his already resilient support team.
Life was as normal as it could be for Brandon, given his condition between 2010 and 2016. However, by mid-2016, the progressive nature of his condition, which was causing his kidneys to increasingly deteriorate, required that he start dialysis.
Dialysis is a process that requires a patient to be hooked up to a machine that essentially helps to filter their blood or do what their kidneys are supposed to do. But according to the President’s College teacher, “up until dialysis I never stopped working or doing my usual routine…but after dialysis there were some things I had to do differently”.
Not only did he have to slow down, but Brandon took a personal decision to change his eating habits too.
“I decided I had to adjust my eating habits to suit my condition…. Having polycystic kidneys means that you are liable to have higher levels of creatinine [a compound which is produced by metabolism of creatine and excreted in the urine] so I started to cut down on meat and all of those things that could impact my kidneys,” related Brandon. In fact, for an entire year he decided to completely abstain from meat kind altogether.
But Brandon was enlightened by information that a kidney transplant could help to improve his wellbeing.
“At first the idea scared me, because that was major surgery. Other than a little cut for appendicitis, I had never been through a major surgery; I had never broken a bone or anything,” Brandon related.
It was a matter that he had to discuss thoroughly with his family members. Although finances were not immediately forthcoming, a kidney donor was. His wife Shanta was willing and ready to donate, and several tests later she was found to be a suitable match.
But it was not an easy task getting to the day that he anticipated would change his life forever. “The preparation was hectic. The whole process leading up to the transplant was tedious and stressful, and literally broke me down, far more than dialysis, because of the things you had to hear people say to you just to get financial help,” Brandon recounted.
Raising funds for Brandon meant swallowing his pride and applying to Facebook to solicit financial help from friends and even strangers. He also held other fundraisers, but still couldn’t accumulate enough money.
He turned to just about every organisation he was affiliated with, to solicit support. However, it was via an appeal he made through the Ministry of Education that Brandon was directed to the Ministry of Public Health, and was able to benefit from US$2000 financial support which went towards his cross-matching test.
“I had to raise about $1 million to do tests leading up to surgery. Some tests were done here but some, because of the cost factor, had to be done overseas…just a blood sample had to be taken from both me and my wife to get a cross-matching tests done overseas,” Brandon reflected.
But as a kidney failure patient, Brandon was still required to continue to fund the cost of dialysis three times each week. This, according to him, amounted to $36,000 being drained from his wallet each week.
Brandon explained that although when a patient is admitted at the GPHC with kidney failure, they are offered free dialysis, once discharged that free service comes to an end. Patients are then required to seek dialysis service at private institutions.
However, in recognition of the fact that many patients do not have the sustained financial capacity to meet the weekly cost of dialysis, Government had instituted a programme to finance the first 40 sessions. But Brandon had already utilised his free sessions since in 2016. This therefore meant he was saddled with raising funds to conduct tests for a kidney transplant and maintaining the cost for his weekly dialysis.
But his eyes were on the ultimate prize – an improved life after surgery – and so he soldiered on. Dialysis for him would continue until April 2017. Although a date was initially set for him to undergo surgery in February 2017, because of unforeseen circumstances it was pushed to April. Brandon would be the fourth kidney failure patient to be operated on at the GPHC in that year, under the guidance of local Kidney Transplant Surgeon, Dr. Kishore Persaud, and team. Two other patients were slated for operation after his.
It all went down on the Easter weekend of 2017 and Brandon has since deduced, “they did a spectacular job. The doctors and nurses were so helpful…they left a list with their numbers on a wall, and you could call them at anytime about any issue and they were there to help. I do not regret choosing transplant.”
Brandon recalled that from being a frail man standing 176 cm tall, he quickly added about 10 kilograms after surgery since his appetite was off the chart.
“I was eating like crazy, before surgery I barely had an appetite…since surgery I haven’t loss my appetite one day, I have been trying to control it though,” said an amused Brandon.
But his survival continues to be dependent on regular checkups, a few tests and his sustained use of immunosuppressant drugs that are required to ensure that his body does not reject the kidney his wife lovingly gave to him. But with each passing day, he sees his life as a blessing, which increases his belief that with God on his side, just about anything is possible, even combating the challenges of a genetic condition that threatened his very existence.